organization

I talked in my last post about how difficult it is to know how you are feeling when you are on the autism spectrum. It’s commonly said about autistic people: ‘Oh, they can’t express their feelings’. I would argue that it is a lot more complex than that. In fact, those who know me well would say that I’m very eloquent in expressing my feelings. But learning to express my feelings has been a long and complicated process. When your body and mind are hypersensitive, and take in every detail, you feel a lot of things very intensely and simultaneously, which can easily lead to overload. And that makes it pretty much impossible to know at a particular moment what you are feeling – to be able to break down every feeling and the reasons for it. You’re too busy just trying to survive! And if you don’t know what you are feeling, it is of course impossible to express it in words. So part of my journey has been learning to process and know what I’m feeling – then I can express it.

I’ve written before about how writing helps me to process my feelings. I often don’t know what I’m feeling until I write. It’s like my thoughts and feelings bypass the ‘inside my head’ processing, and go straight from being an unprocessed mess inside me to being an organised, clear description on the page. It’s as if my fingers themselves are doing the thinking as they type or write! I can’t explain this, other than to say it happens, and continues to happen, each time I write. From the simplest things like realising I’m tired or hungry (so many times I’ve written ‘I’m hungry’ and then realised at that moment that, yes, I am hungry – the writing had to come first, before I realised it!) to more complex things like writing about my feelings when someone dies.

I find the more overwhelmed I am, the more necessary it is to write – although ironically it’s when I’m most overwhelmed that I find it hardest to discipline myself to sit down and write. It is a discipline – and when one is busy with lots of other essential things, it’s easy to not bother. But as I have grown older, I’ve realised that writing, while it may seem like an optional extra, is really a necessity for me, and is the major way I’ve grown and developed and learnt to understand myself and the world around me, and to function and thrive.

I’ve realised something new about this recently. I discovered a site called 750 Words. The idea is that you write 750 words a day, and the site gives you ‘badges’ for writing a certain number of days in a row, and there are graphs that show your writing speed, and also your mood and attitude while writing (based on the words you use – it’s not always accurate, but it’s quite fun, at least if you’re someone who likes graphs!). So I’ve been doing this, and have found that the graphs and badges have motivated me like nothing before has – and I got so carried away with wanting to write lots of words that I decided to write 5,000 words a day. On the free 30 day trial, you can only write up to 1,000 words a day, but if you buy a ‘cup of patronage’, which is $5 (around £3 in UK money) you can write unlimited words. So I did this, because I was finding the site so very useful and wanted to see what it would be like if I wrote a much greater number of words. I then started writing 5,000 words a day, and sometimes more – sometimes 10,000.

This is way more than I normally write, and I figured I’d probably dry up and not know what to write and get bored – but instead, I found that I was writing all sorts. Lots of pointless things – just any observation that occurred to me – but also things that were important. Not only was I writing thoughts and feelings, but I was writing things I had to do as they occurred to me. And I found the act of writing them down like this actually got me to do them – far more effectively than a ‘to do’ list, which always overwhelms me. I have always had a difficulty with organisation (‘executive dysfunction’, it’s called, and is a common problem for autistic people), and have experimented with all sorts of strategies, but this actually helped me get things done. I can’t explain why, and can’t say it will necessarily help others on the autism spectrum, but the simple act of remembering and writing down things I have to do, as part of the process of writing down my thoughts in general, has made me organised than I’ve ever been. I’d write about it and then do it.

I’ve also found that the extended writing, of several thousand words a day, has got me beyond simply just expressing how I’m feeling, to finding solutions to things that bothered me. I was quite upset that the 750 words site was only free for 30 days, and then I’d have to sign up and pay monthly, when I don’t have an income at the moment. I wrote a lot of upset feelings about this, but then, as I kept writing, I found myself moving on to exploring solutions – such as maybe joining up each month with a different email address, or finding another site, or looking for software that I could use without even having to connect to the internet. And then it occurred to me that maybe there was another way to get membership without paying, even though the site didn’t say so – thinking of other sites, where I’ve written articles, or volunteered as staff on the site, in order to get a membership.

So – and this is partly the reason for this blog post! – I decided to ask if I could earn some membership by writing a blog post about the site, telling people how useful it is for people on the autism spectrum. To be honest, I’d kind of wanted to write a blog post about it anyway – I like to share things that are useful – but I figured this could make it a ‘win-win’ situation. Once I’d thought of this idea, I went to the ‘help’ section, and actually found there was a category of request called ‘plea for membership’ – which immediately made me realise that the site owners are open to granting membership to people with no money. So I asked. And was granted four months membership, even without having written a blog post.

I’m glad – because I feel a bit awkward recommending a site which is a paid site, knowing that not everyone can afford a monthly payment. What I was originally going to say – and which still is the case, really – is that I’d recommend doing the 30-day trial, if you think that writing daily could help processing your feelings and thoughts. And then, if you find it helpful, you can go to the ‘help’ page and do a plea for membership. I recommended it to a friend of mine with Aspergers, who doesn’t normally write (he’s dyslexic), but who wanted a way to understand himself and how his Aspergers affects him. He’s been using it every day since I recommended it, and is finding it helpful – so that makes me realise it’s not just me. And I’ll say here what I said to him – it doesn’t matter if you spell things wrong or write with wrong grammar. It’s just the idea of getting your thoughts and feelings out, in whatever mess they are in – a sort of brain dump. And if you are a visual person, it can be helpful to see your thoughts written out, rather than have them all in a muddle in your head.

Another thing I realised, through asking questions in the help section (all answered by Kellianne, who is very helpful) is that a ‘cup of patronage’ on this site is the same as a month of membership. So as well as buying myself the ability to write more than 1,000 words a day, I had also bought myself a month of membership. It isn’t clear on the site that membership and patronage are the same – at least, it wasn’t clear to me – so I am explaining this here, because it’s something I would have liked to know from the start. Membership is when you start a standing payment that is taken from your account every month, and patronage is a one off payment. Also, you can ‘use up’ your patronage by writing a ‘note of inspiration’ instead of having a month of membership.

The site also has monthly challenges – these just involve writing at least 750 words a day for each day of the month. If you sign up for a month’s challenge and complete it, then you get a ‘cup of patronage’. So, the most logical way to organise being able to use this site is to start a trial membership on the first day of a month that has 30 days. Then you can complete the challenge in your 30 day trial and have a free month, and if you join up for the month challenge each month, and complete it, then you’ll keep getting another free month. This is a way both to use the site for free and to be strongly motivated to write every day!

Of course, if you can afford it and if you like the site, you might want to donate as well. Which was part of the reason I wanted to buy a cup of patronage – as well as wanting to write more than 1,000 words, I was getting a lot out of the site, and wanted to give to it. I just couldn’t commit to doing that every month at the moment.

I will add, because this is always an important consideration of mine when finding sites to write on, that you can customise the writing page – change the font, the background colour, etc. Which is very important for those of us with visual processing difficulties (Irlen Syndrome).

There are of course lots of other sites where you can write too. Penzu is a favourite of mine, and I use that for more structured writing, like writing blog posts (I’m using it right now, in fact!). You can get a free account or pay for a Pro account. The Pro accounts are $19 a year – maybe I could try asking the Penzu people for a free Pro account in exchange for writing about them here! I had a Pro account once for a year, from someone using my link to get a Pro account. It’s a thing they do – so if anyone wants a Penzu Pro account, and wants 20% off, use this link: http://penzu.com/r/86ed2f7e – and then I get a free year of Penzu Pro. And you would also get a link where you could do the same. Penzu Pro is good because it lets you have several journals and you can customise the page to different colour backgrounds (again, so important if you have visual processing difficulties).

But the most important thing, I think, is just to write. I have written in all sorts of ways over the years, with pencil or pen in paper note books, typing in Word documents, in diary software, etc. At the moment, my favourite way to write my thoughts and feelings is the 750 words site – the badges and the graphs are amazingly motivating and fun, and the site owners seem friendly and helpful, which I think is important. I’ve only been using the site for 19 days so far – I was trying to put off writing a blog post until I’d used it for longer, but I guess I can always write another one in a year’s time if I’m still doing it, and then I’ll have a better idea of the longterm effects of such intense writing every day. But in the 19 days, I have written 104,000 words altogether, which I’m quite amazed by! And so far I’m feeling more organised in my thinking and more positive and strategic. So I’d definitely recommend giving it a try.

It’s been a while since I wrote a blog post. It’s not that I don’t have anything to say – I’ve thought of all kinds of topics to write about, and planned them in my mind, but somehow the actual act of getting myself to sit down and writing them seemed hard. Not that I find it hard to actually write blog posts – I like to write them – but what is hard is the actual switch from whatever I’m doing to something different.

As this is a common aspect of Aspergers, I decided I might as well write a post about it – as a way of both explaining my absence and illustrating why people on the autistic spectrum have difficulties with organisation, and why the ‘perseveration’ thing happens.

I’d never actually heard the term ‘perseveration’ until I started reading about autism and Asperger Syndrome, and then I immediately knew what was being described. I can illustrate in by talking about the past couple of weeks.

Once I started doing the ‘100 things’ strategy described in my last post, I became focused on organisation. I started planning my meals for the week too, which got me thinking about health, and starting to plan exercise. I started keeping a journal to keep track of all I do each day, dividing my life into various categories, such as ‘house’, ‘food’, ‘exercise’, ‘finance’, ‘relaxation’, etc. This became the focus of my life for a few days – I had to be constantly aware of it for it to work, and in order to be constantly aware of it, I had to focus my mind on it to the exclusion of all else.

Then I started going for walks in the woodlands and in the moors. This seemed a logical way of combining the categories of enjoyment, relaxation and exercise, because I really enjoy such walks. Once I started, I would walk for hours and hours, so walking became the focus of my days. I started taking photographs of the trees, because I love trees – their shapes fascinate me. My days became totally focused on woodland walks and capturing them in photographs, and then collecting these photos onto my laptop, cropping them and resizing them. I completely forgot about all other aspects of organisation, and the journal I was keeping. I just remembered it yesterday, and realised I hadn’t written in it for six days.

When I stand back from this, I feel frustrated, because although I love walking in the woodlands and the moors, I don’t want my whole life to consist of that. I also love reading novels, and had actually planned to do some reading. I always took a book along on my walks, thinking I would sit down at some point and read it. But somehow my mind just wouldn’t switch from walking mode to reading mode. I was walking and I would keep on walking. I would sit down sometimes on the walks, to have something to eat, but I wouldn’t read, because reading seemed like a completely different world. The switch from focusing on the walk and the trees to focusing on a book seemed like a vast chasm.

This isn’t to say that I can’t read when on a walk – but to do that, my whole focus would have to be on reading. I’d be oblivious to the beauty of the woodlands and countryside around me. When I was a kid, my focus was often entirely on reading. Wherever I went, I would bring a book and I would read it – read it while walking along, reading when stopping anywhere, etc. – because reading was what occupied my mind.

I’m trying to think of an analogy so people can understand the difficulty switching from one thing to another. It’s kind of like moving to another country on the spur of the moment. For most people who have lived in the same country all their lives, this would be an enormous and difficult transition – because your mind is accustomed to your own country. You have learnt to take many things for granted which would all change if you moved to another country – it would be a huge transition, and would be very difficult to just switch from your life here to moving there. Not just in practical terms, but in mental adjustment.

Interestingly, I moved to Canada for five years when I was 21, and many people said how brave I was, but to me there was nothing unusual about it, because all changes are huge for me. Moving to Canada was no different. Obviously, in practical terms, the actual act of switching from walking to reading is nothing like the act of moving to Canada. There were all kinds of complicated things involved in moving to Canada, like applying to be a student at the university, getting a student visa, organising accommodation, booking a flight, etc. – whereas switching from walking to reading just involves sitting down and taking a book out of my bag, opening it and reading it. But the difficulty is not in the practicalities of the act itself – it’s in the switching of mindset.

This is why people on the autism spectrum often develop special interests. Once we are focused on one thing, it is so much easier to keep focusing on it than to switch to something else. Something else may arise from it, as a side thing, like woodland walks arising from my focus on organisation, but it arises because of a link. It’s much easier to switch naturally to something that is somehow linked than to switch to something which is unrelated. For instance, when on my walks, I started thinking about how I’d like to read some reference books about trees and flowers and insects and birds. If I were to do that, then I would probably start focusing on reading, and then may well start reading novels again. But if I were to just pick up a novel and read it today, I may enjoy it but it would feel disjointed from the rest of my life, unless there was a central theme of my life to which the book related.

This is why life can feel fragmented for people on the autistic spectrum. We often lack a sense of overall cohesion – ‘central coherence’ – so we find one thing to focus on, and somehow everything else needs to relate to this.

Understanding this can help with devising strategies. For children on the autistic spectrum, who have various activities organised by adults, it would be helpful to find some way of linking the activities, so there is not the uncomfortable jolt of switching from one to the other. For instance, as a kid, I would never want to go to bed when it was bedtime. This was because my mind was focused on whatever I was doing, and couldn’t make the switch to going to bed, which was, to use my analogy, like moving to another country. What would happen is that my mother would get angry, which didn’t help, because it became a fight, which made me even less inclined to relax and quieten for bed.

It occurs to me in retrospect that if instead there had been some kind of link, and routine, it would have been easier. It’s hard to know exactly what would have worked, but it occurs to me that maybe if lights had been dimmed, and soft relaxing music been played, or maybe a scented candle burnt (out of reach, for safety) at a certain time, then this might have somehow prepared my mind to quieten down, and I would have started to associate these sensory cues with going to bed.

I probably could do something like that for myself as an adult too (as I still have a lot of difficulty going to bed at a regular time) – although then I’d be responsible for the cues myself, so I’d have to somehow find a way of making myself do them at the right time. I’m still trying to work this out in my mind, so I have no definite strategies, but I will experiment with trying to find something that works. Maybe having an alarm clock go off at a certain time in the evening when I want to start preparing my mind for bed time – and putting the alarm clock by my aromatherapy oil burner, as a cue for lighting it, and that could act as a cue for dimming lights. I will try this and if it works, I’ll write another post about it.

When I was 13, I changed school. Well, I changed school many times in my childhood, but what was significant about the change at age 13 was the English teacher. The English teacher at my new school was not like any teacher I’d had before.

Everyone said she was their favourite teacher, but I wasn’t so sure. She would spend a large portion of the lessons chatting to us. Chatting about the sorts of things that the girls in the class wanted to talk about – it was a girls’ school, so this included chats about periods and boyfriends and make-up. I didn’t like this much because it seemed to have no structure, and didn’t seem to have anything to do with English. In retrospect, I see how she added the curriculum in subtly, and tried to make it as relevant and interesting as possible, but at the time, I had no idea of what we were supposed to be learning in these classes.

Then she set us a project to do. We each had to put together a project entitled ‘Me’ – it could include pieces of writing, and photos, and anything that gave information about us. No deadline was given. It was just something we were to work on throughout the term.

I wasn’t happy with this. Firstly, I came to school to be taught information, not to give private information about myself to a teacher who didn’t know me. ‘Me’ was none of her business. And secondly, I had no idea what she wanted. This project was incredibly vague. ‘Me’ is such a huge topic – there were all kinds of aspects about myself, and I had no idea where to start or what she wanted. So I simply didn’t do it.

Each week, in the English lessons, the teacher would ask how people were getting along, and they’d show her what they’d done. She would set aside time in the English lessons for us to get on with our projects – but she was always so vague and didn’t say we definitely had to spend the time doing it, so I simply didn’t. She would come along and ask me how I was coming along with my project, and I would tell her that I hadn’t started it yet because I was busy. She was understanding at first (after all, I’d just started a new school, so had lots of catching up to do) and then got a little impatient. But she never actually told me directly that I had to do it, or gave a deadline or anything. So I simply didn’t do it.

Then, in the middle of the term, when everyone was still doing their ‘Me’ projects, she gave us another piece of work. Two simultaneous pieces of work was very confusing to me! But the new assignment was a bit clearer. We had to write a short story, entitled ‘The Mask’. And we were given a deadline. The teacher gave us lots of different examples of the kinds of social masks people could wear – it could be a literal mask or a figurative mask, she told us. She was very much one for giving us as much freedom as possible, but this confused me. I needed to know exactly what I had to do. After she’d spent the lesson talking about this assignment, she asked if we had any questions.

I put up my hand. ‘I don’t understand what we have to write about.’

Her smile faded and she said ‘I don’t know what to say. I’ve just been spending the whole lesson telling you.’

‘Is it that the story is about a person who is pretending to be something she is not?’ I asked. She hadn’t actually said this – all she’d done was give examples of masks – and so I needed the assignment question clarified, in these specific words.

‘Yes, it can be,’ she said, looking relieved. ‘See, you do understand it.’

I focused my energy on this assignment. We didn’t have exercise books for English, so I wrote the story on A4 paper. This was in the days before computers were the norm, so I handwrote it, in my best fountain pen, with a calligraphy nib. I created covers for the story, made out of coloured paper, with the words ‘THE MASK’ cut out and stuck on.

I still have this story, all these years later. It reads pretty much as an Enid Blyton story. Although the plot was my own, it used the techniques, ideas and style of Enid Blyton, who was my favourite author in my childhood. I hadn’t deliberately based the story on her writing – it just happened, because she was the author I read a lot of. This also meant that my grammar and spelling was perfect, because I observed grammar and spelling from what I read, and learnt the patterns. My story was old-fashioned, and out-of-place next to the other girls’ stories of unfaithful boyfriends and teens with self-esteem problems. It was about a girl in a boarding school who stole pretty things because she had no money, and pretended to agree with everyone because she wanted them all to like her. There was a strong moral at the end, just like in Enid Blyton books.

Although old-fashioned and out-of-place, with a rather archaic style, it was a very good story for a 13-year-old to have written. I got an A. The teacher’s comments were ‘Marvellous: a story that ideally illustrates the title; extremely well written with a wide vocabulary; and beautifully presented. What more could a teacher want?!’

Now, as I write about this, I realise there are all kinds of things I could use from this story to illustrate aspects of Aspergers. I could talk about how people on the autistic spectrum are more comfortable with structure, or how we need assignments and expectations to be explained in a direct and specific way. I could talk about how role changes (such as when a teacher acts more as a chum than a teacher to the class) can be disorientating and unpleasant. But I was actually intending to use this story to illustrate something completely different – that is, the problems with organisation that people on the spectrum often have.

Later on in that term at school, there was a parents’ evening. My mother went to it, and she told me afterwards about her conversation with the English teacher. Apparently the English teacher had told my mother that she was finding it hard to figure me out. When I hadn’t handed in any work for the project, she had assumed I must be lazy. And then I’d handed in a story which totally astonished her. She raved to my mother about how good the story was, and also how much work I’d clearly put into it to make it nicely presented.

I have found, over the years, that this is a common reaction people have to me. When I don’t know what to do and thus don’t do anything or appear confused, people think I’m lazy or stupid – and then when I know what to do and do it, they are amazed at how good it is and how much work I’ve put into it. Then they don’t know what to do with their previous assumption about me being lazy and stupid, because the new evidence contradicts this. People see me as two extremes, and find it very hard to figure me out.

So I decided it might be helpful to explain it, from my perspective. I am not lazy. I am not stupid. However, my brain has a lot of difficulty making overall sense of something unless it explained clearly and specifically, and furthermore, if it is a huge task, requiring many different things, it’s as if my brain freezes.

One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload. So, for instance, when I saw I had to do a project about ‘me’, I saw in my mind every aspect of myself, every moment of my life, and I knew it was impossible to cover all this, and so I got overwhelmed by it and switched off my mind from it.

Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.

Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.

I’m now going to give the very different example of tidying my house. Actually, it was this example of tidying my house that first prompted me to write this entry. Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.

I have tried telling myself I will tidy one room, or one corner of a room, or one drawer, but whenever I do this, I seem to get stuck on certain objects, not knowing what to do with them or whether I need to keep them, not really wanting them but afraid to throw them out in case I need them, not having the prioritisation powers to know if something is important or not. So I frequently find myself sitting on my floor surrounded by stuff, feeling helpless and overwhelmed.

People generally think I’m lazy with regard to my house. I’ve been told that if I really wanted to tidy it, I would. I’ve been told that it’s easy and that there’s no reason why I can’t keep it tidy other than bone idleness. I find these assumptions frustrating. I know I’m not lazy. I know I will work on something for hours and hours, forgetting to eat, forgetting to sleep, paying attention to every little detail, if I know what I’d doing. But the messiness of my house somehow communicates to people that I’m lazy, in the same way as my not doing the ‘Me’ project communicated to my English teacher that I was lazy. These assumptions used to make me angry, but now I’ve pretty much accepted them as inevitable. People assume other people are like themselves. Even if you explain how your mind works to someone, if they haven’t experienced it personally, they never really get it. I think a particular difficulty with this house tidying thing is that many people have difficulty keeping their house tidy, so their reaction to my difficulties is ‘Me too!’ – with an added assumption that what works for them will work for me.

I have put a lot of time and effort into trying to find strategies to help me organise my life and tidy my house. It’s an ongoing struggle and causes a lot of frustration and unhappiness, because I’m atually very highly motivated in many ways, and so it makes no sense to me that I can want something so much, be able to intricately plan ways to achieve it, know that I have the intelligence and diligence to achieve it, but somehow be unable to make myself do it. In fact, I can sort of understand why people say I can’t really want it, even though this is not the case, because there doesn’t seem to be a logical explanation.

But there is one strategy that does work for me, when I employ it (actually making myself put it into action is another struggle!). And that is what I call the ‘ten things’ strategy. Rather than saying I will tidy a certain part of my house, I tell myself I will pick up ten things – these may be things to throw away or recycle or put away, but the point is that I pick them up and do with them what needs doing. Because the ‘ten things’ are unspecified, I can avoid things that I am unsure about. There is also no need to prioritise or sequence – I can pick up whatever I want in whatever order I want. The only thing I have to focus on is the number ten. So I am collecting ten things – and it’s fun to work towards a number. Once I’ve done the ten things, the aim is to do ten lots of ten things – so 100 things. Again, there is a number to aim towards, and the things can be as small and varied as I like – a scrap of paper on the floor to put in the bin, a cup in the draining rack to put away, a bottle to put in my recycle box.

In some ways it seems like cheating when I avoid the more confusing things that I don’t know what to do with – but I find that the more small things I deal with, the less cluttered and overwhelming my house becomes, and then the easier it is to focus on bigger things. It occurs to me that this ‘ten things’ method could be applied to all sorts of things, and could be used with children on the autistic spectrum who are overwhelmed when told to tidy their bedroom, for instance. It can also be used by people who are not on the autistic spectrum, if it is helpful.

Anyway, I used this method today, which is what prompted this entry. I picked up ten lots of ten things downstairs and ten lots of ten things upstairs, and then fifty more things – so 250 things altogether. My house is still a mess, but not so much of a mess as it was. If I could use this method every day for a week, it will be interesting to see how tidy my house becomes.